My Diagnosis – conclusion

My Diagnosis – conclusion

The first 9 days were spent being bombarded with 250mg IV Prednisone, 4 to 5 bags of Potassium, 1 or 2 bags of Magnesium and a nice selection of oral dietary meds. I felt like a huge balloon ready to take flight. My skin was so tight around my legs that I thought I would go insane. I was still unable to eat and was on so much medication for nutrition that I thought I would surely die from the meds alone. On day 6 I caught a nasty intestinal bacterial infection that required even more drugs to treat. Finally, I told my surgeon and gastro doc that I was done and they had to do something. Once the bacterial infection cleared, I was scheduled for surgery. I was not scared; I was so damned relieved that I was ready to party in Vegas!

The night before surgery, I took the time to write a goodbye letter to my husband with instructions asking him to relay things to my family. I also went online and finished my will that I had started several months earlier.I was OK, but I wanted to make sure that those I loved were alright. It was robotic at the time, but when I look back on it now, it makes me very emotional.

In the morning, I kissed Nick and told him I loved him and off I went. As I was in the hallway just outside the OR waiting for them to finish setting up, my surgeon came out and said, “How would you like something for the pain?” At this point, I had little to no pain meds because they needed to know where I was hurting and to what degree. I told him that I was OK and just wanted to be warm again. Since this weight loss, over 90 pounds by now, I would sit in the sun and still shiver from the cold. Meanwhile, we were experiencing record temperatures over 100 degrees for the past couple of weeks.

I was wheeled in and off to sleep I went holding my surgeons hand. He and my gastro doc had become like family by now. He was of great comfort to me. But, oddly enough, I was not afraid; I just wanted to feel better. When he had taken out my gallbladder he said to me in the pre-op, “I won’t be in recovery to see you unless there is a problem. I want my patients to be coherent and be able to understand what I say to them. I will come see you in your room later when you can comprehend.”

When I awoke almost 6 hours later in recovery from what was supposed to be a 30 to 60 minute surgery, guess who was standing next to me? I was alarmed and I was waiting to hear the dreaded the “C” word. My surgeon was holding my hand, rubbing my forearm and said, “Brandee- it’s all over. You are going to be just fine. I want to apologize to you. None of us knew just how ill you really were. You’ve been working on this for at least 20 years. Get some rest and I will see you in a few hours.” I said, “Have you talked to Nick? Is he alright? Did you find any signs of cancer?” He answered me verbatim, “Yes. I think so, and, absolutely not. Now go to sleep.”

It turned out that my small intestine had actually collapsed on itself. It had fused together; it was dead tissue. There was an opening smaller than the size of a pencil lead. Thus, no food could get through and that was why I would become so violently ill if I dared to eat. It had taken hours to dissect the scar tissue that had encapsulated about 15 inches of my small intestine that was eventually removed. I saw the photo’s that were taken and I won’t go into the gory details. Let it suffice to say that it is one thing seeing this kind of thing on Discovery Health; it is another thing entirely to see your own intestines lying out on a cloth across your lap, totally unrecognizable due to the extent of the disease.

My surgeon said that it in 26 years of doing resections and the like, he had never seen someone as young as me have such advanced disease. Without a doubt, I had been misdiagnosed at 16 with the IBS. It had been Crohn’s all along and the PMS diagnosis was also incorrect- they were Crohn’s flares. More importantly, I was not crazy.

THE burger. THE cheese. THE bun. Food of the Gods! My first bite of solid food in nearly 7 months.

Over the next few days I began feeling better. On day 3 pre-op, I was allowed to eat. I said to Nick, “I want a burger, a cheese and a bun!” My way of asking for a plain cheeseburger. He took a photo of my first bite of food in six months. I was able to eat about 1/2 of the burger before I was full. It was the best thing I had ever eaten in my life! I did begin to worry soon after, that I was going to be in severe pain shortly. That moment never came. Yes, the photo to the right is THE burger, THE cheese and THE bun.

As soon as my pain ball was empty, I asked to be released. I really had to do some smooth talking between my doctors to get the OK. Once I had it, I was so out of there! I wanted to get goin’ before they changed their minds. When I look back, I should have stayed for another couple of days due to severe swelling in my legs and a few other incidental issues. All together it took me about 3 months to return to a pseudo normal. I still have issues and I always will. But, after what I have been through, I know that I can get through just about anything.

If you find yourself reading this and saying to yourself, “THIS IS MY STORY!”, know that you are not alone and there are more of us out there like you. Seek out competent medical attention as quickly as possible.And always listen to your body and your inner voice. Never let anyone, including those with a degree in a spiffy frame on the wall, tell you that it is all in your head and you are alright, when you know differently. Know your body and educate your medical providers as I do, so that the next person who comes to see them can walk an easier road.

Time has now come full circle. It is November 17, 2008 and it has been one year since I started on this long journey. I am now in remission from my Crohn’s. I am on 6MP to suppress my immune system so that the white blood cells do not attack me again. I am told that patients typically stay in remission from 2 to 10 years before the Crohn’s strikes again. Unfortunately, once you have this disease, even if they surgically remove it all, it will eventually come back. My hope is that my biggest Crohn’s fear never develops- that it attacks my colon. Bee Positive *buzz, buzz*

If you would like to continue to follow me through this disease, please feel free to do so. You may click on the “BLOG” link at the top of this page to catch up on current events as I walk through my life and deal with living with Crohn’s disease. You will find humor, sick as it may be at times, information about this disease and a small window inside my world where I try to stay positive on good days and bad ones, too.

Take care of you,

Brandee

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Gosh! There’s not a lot in this world that brings me to tears, but, your story has! I feel really angry that you had to suffer for so long, but at the same time understand. I too have Crohns and, like you went through a similar nightmare before being admitted and operated on as an emergency! I too was told ‘its IBS’, ‘you have endometriosis’, ‘you really do have a low pain threshold!’, ‘you are constipated’ . Finally, relieved to be in hospital and feeling like someone does understand and I’m not going mad, the surgeon and his gaggle of clingons states out of the blue ‘well, its not cancer!’. It hadn’t even crossed my mind! Anyhows, one hemicolectomy and now 15 years on I have more confidence in TELLING my GP and specialists what IS wrong and what I WANT them to do! They now know that I understand my own body and do what I ask!
Don’t worry too much about flares! You will get them and in 15 years I’ve had 3. The good thing is that you know what it is when it happens, can get help STRAIGHT away and with the right meds and a lot of rest you get through it.
So, keep strong, keep living life and don’t let anyone get in the way of you and your body!
Good luck and well done for being so very strong.

Thank you so much for comments. It’s responses like yours that just strengthen my purpose for this blog. I know people like are out there suffering with no place to turn and hopefully, coming here will give them a renewed confidence allowing them to get the help they need.

Hi Brandee,
I’ve just stumbled across your blog after researching crohns and it is so comforting and inspirational to hear your story!
My mum has suffered with this dreadful disease ever since I can remember. She was diagnosed when she was 21 and when i was 7 years old she went into relapse. She was rushed into hospital and was found to have peritonitis, a complication she developed from her crohns. I’m unsure of specifically how much the surgeons had to cut away but I know it was some of her stomach, small and large intestine and her gallbladder. It was heartbreaking to see my mother before the surgery, thinking it may be the last time I’d ever see her. She became very close with all her surgeons and called them ‘angels’ for saving her life. They told her she will have 10 years before she relapses again.
I am now 21 and my mother, 50 and since her surgery she has suffered two relapses. These have not been as severe, but the most recent required her to stay in hospital for four days. Her doctors are currently keeping an eye on her, but they are trying to prevent surgery in the near future. My mum tells me she may need a colostomy bag in the future and this naturally terrifies me.
At present she is ok, but ever since dealing with her disease since I’ve been young, I live on the edge not knowing how she’ll feel in the future. Sometimes I think it has affected me more, mentally than it has her. Some parts of your story really ring true to me and how my mum has reacted/dealt with her illness in the past. She has always been very brave, like you and soldiered on through raising me and my sister when we were babies despite suffering in agony. She told me recently that despite being in hospital when people visit her, they’re the weaker ones because she can be strong because she knows she is surrounded by the nurses and doctors who can take care of her. Those who visit her are weaker, because they are suffering from what she is going through, but she is there for them to offload their problems.
My apologies for rambling on, I hope the part of this story I have told helps you like your story has helped me. Thank you so much for sharing what you have gone through, it’s a horrible injustice that you had to suffer so long. I find comfort in researching the disease on the internet, that is how I came across your blog. I feel helpless to my mum 99% of the time, but learning about her disease helps me to understand it and the more I understand it the more I can help her fight it. Don’t give up, for your life is worth fighting for (I know you don’t need me to tell you that though, you’re already a fighter).
All the best from the UK,
Rachel x

Thanks for the blog Brandee. Strangely enough I found myself smiling at parts of your story. I’ve been fighting what I assume is Crohn’s for about 15 years. It may be, but then again maybe not. A few years ago I was looking into it but I got sidetracked and really gave up on finding a solution. In the beginning of this I got hammered all at once, like within 18 months, with multiple issues that took 10 years to unravel a piece at a time. I had back surgery. That helped but didn’t fix it. 6 months later I had a hastily planned septal myectomy for hypertrophic cardiomyopathy. The results were a mixed bag. Still I have the issues similar, but not as severely as you – the constant discomfort from eating (what small selection of safe foods I’ve found), recovery days of NOT eating, irritability, seclusion, anger, frustration, fatigue, confusion and the overall feeling that somehow I keep getting dumber by the day and I’ve got a long streak of stupid decisions and bad judgment calls to support it. It’s good to know I’m not the only one losing my mind.